Touched by Lyme

TOUCHED BY LYME: Respond now to "Healthy People" initiative

From guest blogger Jennifer Crystal: Do your part to promote Lyme disease education and prevention. Submit a comment to HealthyPeople.gov, asking for the prevention and treatment of Lyme disease to be listed as a national objective of the US goverment. Deadline is Nov. 6, 2012.

One word I keep hearing over and over at the conference is education. During Thursday night’s lively dinner discussion, someone asked, so how do we overcome all of these frustrations surrounding tick-borne illness? How do we get people the help that they need? How do we get patients to fight to find proper diagnosis and treatment, and how do we get doctors to become Lyme literate? One way is education.

Perhaps it is fitting, then, that the ILADS conference is being held in Boston, an academic hub of over fifty college and universities with a longstanding tradition of valuing education. In his opening address yesterday, ILADS President Dr. Leo Shea said, “The pilgrims thought about freedom, and that’s what we want to think about when we talk about ILADS.” As we patients have seen time and again, it is education that leads to such freedom. Referring to other conferences that have been or will be held abroad, Dr. Shea said, “We want to put Lyme forward in the world and have people understand the travesty of Lyme Disease.”

One thing we can do to help spread Lyme education is to tell our stories to www.healthypeople.gov, a governmental organization that “provides 10 year national objectives for improving the health of all Americans.” Since 1979, Healthy People has been used by every state to inform disease prevention, based on the established objectives. In her talk yesterday called “Healthy People 2020: Making it Work for You,” Carter Blakely said that while Lyme disease once was a Healthy People objective, it was dropped because the Lyme vaccine was pulled. As we Lymies know, a vaccine is a controversial prevention method; moreover, we know that there are many more ways to prevent Lyme disease, or to prevent it from becoming chronic. Once again, education here is key.

Healthy People is opening up a section on its website for public comment, where people can either propose new objectives or make a comment on a proposed one. Let’s work together to propose Lyme disease prevention as a Healthy People objective! To add your comment, please go to www.healthypeople.gov. It’s important to read through the rules on the website that state the format an objective needs to take, and to follow that format in your comment. NOTE: THIS SECTION FOR PUBLIC COMMENT WILL ONLY BE AVAILABLE UNTIL NOVEMBER 6TH AT 5PM. ACT NOW!

We invite you to comment on our Facebook page.

3 Comments

I HAVE WRITTEN MANY TIMES ON FB AND MORE IN CAPS DUE TO MY EYE SIGHT. LIVING WITH LYME DISEASE AND WAS SEEN BY 20 DR’S IN THE LA COUNTY IN SOUTHERN CA. AND HAD 13 SURGERIES ALL DUE TO BAD BACTERIA AND NOT ONE SPECIALIST TOOK MY BACTERIA SERIOUS. I COME FROM A NURSING BACKROUND AND WHEN I SAID MY KILLER T CELLS DO NOT LOOK GOOD THEY DID NOT BELIEVE ME THESE WERE INFECTIOUS DR’S FROM UCLA AND CEDARS IN LA CA. TODAY AFTER 9 LONG YRS I DO GET CARE BUT IT TOOK 8 YRS AND THE ILLNESS AND LOST MANY JOBS DUE TO THIS TERRIBLE DISEASE. MY FAMILY DID NOT BELIEVE HOW SICK I WAS AND DR’S JUST KEPT DOING SINUS SURGERY AND EYE SURGERY AND BOWEL SURGERY AND MUCH MORE TEETH SURGERIES AND I WAS SO TOXIC AND FULL OF BUGS AND PARASITES AND NOT GETTING THE RIGHT CARE. I WAS SO SICK AND DIZZY AND DIGESTIVE PROBLEMS LEGS IN PAIN AND MORE. TODAY I AM FINDING OUT IN SOUTHERN CA MORE ARE COMING UP WITH LYME DISEASE THERE ARE FEW DR’S WILLING TO LEARN MOST TURN AWAY.I DO VIDEO’S AND SPEAK MY MIND IT CAN HAPPEN TO ANYONE AND THAT THE PROBLEM NOBODY WANTS TO HEAR IT. IT ABOUT TIME LYME DISEASE CAME OUT AND IS SPOKEN ABOUT ALL OVER THE WORLD LIKE IT IS. FB IS A GOOD TOOL. IF ONLY A DR WOULD OF HEARD MY CALL INSTEAD OF JUST SURGERY AND TELLING ME I LOOK OK. I MAY HAVE A JOB TODAY AND WORKING BECAUSE OF THESE DR’S THAT DID NOT TAKE ME SERIOUS I AM NOT IN REMISSION AND HOPING FOR THE BEST. THANK YOU, MICHELLE I HAVE A LOT OF ANGER FOR SO MANY REASONS, IT ABOUT TIME DR’S LISTEN TO THERE PT’S AND DO TESTING AND NOT JUST GIVE A PILL AND SAY SEE YOU IN 3 MONTHS.

I would love to make a comment on the Healthy People initiative, but it would be helpful if someone more suited to this in the Lyme community wrote it up and we could just parrot it. Otherwise I think the process is too cumbersome for those of us not familiar with public policy/public health etc..

Our family in Oregon has been sadly affected by Lyme Disease. Our daughter was diagnosed at age 16 after at least EIGHT YEARS of symptoms and misdiagnoses or no diagnoses. She was unable to attend school about half of her high school years. She wants to graduate on time this spring, but it will be virtually impossible. Her recovery is much slower than it would have been if her illness was caught earlier. PLEASE spread the word. Lyme Disease can be a devastating illness, and is prevalent all over the U.S. The sooner it is diagnosed and correctly treated, the better for all.